Cancer Support Thread 83 - Here comes the sun (hopefully)

[Silkierabbit]

Welcome to a supportive thread for anyone with cancer to discuss how things are going, ask for advice etc or discuss life in general.

Please feel free to join if you are going through tests as well, hopefully they will come back all clear but if not we are here to hold your hand through the journey.

Named the thread in honour of the lovely LeslieKnope who did thread 62 in the same title who is sadly no longer with us but inspired me with how she was so lovely and kind with stage 4 cancer in her 20s and also the lovely PurpleUnicorns. Thinking of you both. Hopefully there will be some sun inbetween the difficult days.

May be useful to do introductions at start of thread. I am 49, lobular breast cancer, diagnosed Nov 21, after sent for tests then after being dismissed as nothing by GP in June. 46mm and 17mm tumours with 1 lymph node involved. Had 2 surgeries, currently doing chemotherapy, radio next then hormone tablets. 1 husband and 2 kids 16 doing gcses and 15 with SN and mute. 1 Maine Coone kitten, 3 silkie chickens and 1 indoor rabbit.

@Justcantbelieveit Pull up a chair and I’ll hold your hand whilst you wait. The worst time is that between tests/ diagnosis and actually having a plan.
Once a plan forms and you can start ticking off the sessions then life becomes more bearable because you can see a finish, being pregnant as well must be extra difficult. How many weeks along are you?

Welcome Justcantbelieveit. So sorry to hear your sad news, especially whilst pregnant. I have breast cancer, so unfortunately no specialist knowledge of your cancer but sending love and hugs and hopefully someone will be along soon who knows more. Have they said what treatment will be?. I hope they can treat you successfully and your little girl will be fine too. Is it your first child you are pregnant with? How many weeks are you?

I am so sorry for your husband too. It is so awful when you first find out and you do tend to think I will die but there are lots of treatments and I hope there will be a plan for you so you can see your little girl grow up. Awful disease.

@Justcantbelieveit It does come along like a juggernaut, sideswipes you and you’re left spinning on the pavement.
Let your older daughter’s school know, they can be a great place for support for her. My youngest’s school had a few teachers she could go to for help, had free access to the pastoral support team and they arranged for sessions with an external counsellor too.

Welcome to the thread @Justcantbelieveit , sorry you find yourself here. It really is a surreal experience isn’t. One moment you’re biggest moan is the fact no one can tidy up after themselves and then BANG you’ve got a real worry. It’s horrific. It must be even worse when you’re pregnant, you poor thing.

I have my results from surgery tomorrow, should be for definite this week as I called my SCN yesterday with an unrelated query and she confirmed it looks like results are in. I am so scared. I feel ten times better since surgery, I’ve got my zest for life back, I feel healthier than I have in a long time (which makes me wonder how long this has been creeping up on me) and having to now go back to chemo and all that bad stuff will be gutting. Plus I’m terrified they will have found cells in the omentum or lymph nodes which is a huge worry for me today.

@Justcantbelieveit so sorry you find yourself here but we'll all hold your hand whilst you wait. I remember having severe indigestion and thinking I had a stomach ulcer which made me panic about whether I would be able to tolerate an endoscopy. How trivial that seems now, it turned out I had stage 3c ovarian cancer. It must be so worse for you being pregnant as well, you poor thing, and your DH and DD too. A close friend of a family member had leukaemia diagnosed late 2019, and has been clear for a year and a half now. The ladies here are lovely and can answer all your questions or just listen to you. Thinking of you all Xxx

@AGreatUsername I'll be thinking of you tomorrow, the waiting is just awful. I was the same after my surgery and recovery from chemo, I felt better and realised I hadn't felt that much better for a long time Xxx

Troll Hunting??????

Im the one who directed her to this thread after reading her thread that was then taken down last night for a look behind the scenes due to the many reports you received about it.

I then contacted your mods, late last night, and asked for clarification on whether the poster was genuine or not as her thread had been removed but people were still replying to her here. I asked for it to be clarified so that people here weren’t having the Mickey taken out of them by someone who perhaps wasn’t genuine. You replied to me by saying the poster had deregistered so I posted here in order to let people know the Poster wouldn’t likely be back to post anymore replies and that it was unclear whether the poster had been genuine.

Fuck off with your accusations of troll hunting.

And to the person or people on this thread who reported my comments. Shame on you.

Well, Ive missed all that controversy!

Just came on to say that after the lost blood tests, my wonderful oncology nurses have tracked them down, and they are good! Managed to get my meds today. The difference between the two Trusts is enormous. I dread the day I get carted off to A & E because I will get taken to the local hospital, no confidence in them whatsoever. I need to move house

@thereisonlyoneofme glad you got your meds sorted, it’s such a worry when it really shouldn’t be.

@JellyBellyNelly I reported your post as not in the spirit of the thread, not for troll hunting. We take every post here at face value, we are not here to decide who is genuine or not.
My story is one that would make many people decide I was a troll, two cancers diagnosed 10 days apart, many problems including an extravasation from my port (1 year anniversary tomorrow) and so many late effects including lymphoedema of the vagina. Nothing I have been through is normal for someone with cancer but I hope we are more forgiving on this thread.

This thread is for people with cancer at any stage from initial investigations to the final handhold that we have given so freely to many people, we do not need to investigate anyones motives.

We take every post here at face value, we are not here to decide who is genuine or not

Not in the spirit of the thread?

I would have thought that caring about the women on this thread and being worried that I’d inadvertently directed a possible/more than likely fantasist in our direction was very much in the spirit of things in that I didn’t want to see people who had been very kind to me being abused by someone who was lying.

But no matter which way you dress this up it won’t take away from the fact that you behaved in a really heavy handed manner and had you had contacted me to say, ‘please ask for your post to be removed because it’s ok if someone comes along and lies about having cancer’ I would have done it.

with best wishes
jelly

I’ve missed what’s gone on, but it saddens me greatly that someone would lie about going through something so bloody horrible to people going through it. I hope that’s not the case.

Results today for me. I’ll finally know what it is exactly, and a grade and stage if it’s cancer (check me out, 3 months in and still holding on to the slim chance they’re wrong) and what the next steps are. I’ve barely slept and been up and in a foul mood since 6am. I’m always in bad mood when I’m stressed, just want everyone to piss off and leave me alone, I wish I was more open and emotional sometimes.

Thinking of you today Great

Please dont feel bad about directing that poster here Jelly I always treat every post as genuine too and was quite shocked by other thread and MN pulling the thread.

@AGreatUsername thinking of you today, the waiting is torture. I'm also bad tempered when I'm stressed, the trouble is, everything else is running alongside this when you have this enormous load to deal with. You will eliminate the 'what ifs' today but it is horrible for you Xxx

We don't know that she wasn't genuine, the AIBU mob have decreed that she must be a troll and the poster has left the site.

One of the reasons I saw for her not being genuine was that she had been left with a diagnosis and no other information - apparently that never happens in the NHS. Except it happened with both of my diagnoses.

There are a lot of people that read this thread and don't feel able to contribute, you don't even have to be a member to read. I would hate for someone to be reading and not feel that they can post for fear of being called a liar.

@AGreatUsername Good luck for today, fingers crossed for good news.

I would hope anyone would post here without fear of not being believed. I would also hope that regular posters would not be reported for trying to help others.

It is the only case I have come across in four years of reading cancer threads so would say its very rare and I normally would be wary of aibu mob but she had name changed a lot and her posts on the conception thread well would be a medical world first for many of them. Like pre eclamsia scan week 1, appendix op which baby survived, brother aethetist and hospital just had one.

I am not going to discuss this more and I would suggest others stop as well and make it back to a support thread.

We don't know that she wasn't genuine, the AIBU mob have decreed that she must be a troll and the poster has left the site

The thread was on the life limiting illness board. Not AIBU. And it’s really churlish of you to suggest that anyone who doubted her story did so because they were part of a mob. The reality is that a few people posted their doubts on the thread whilst many others reported the thread instead. The many reports were why MN then had to send a mass email to people acknowledging the reports - there had been too many for emails to be sent individually. I wasn’t one of them initially because I wasn’t actually sure and it was only when I had directed her here that I contacted MN to ask if they could clarify whether she was genuine or not. They had already taken the thread down by this time and their reply to me was that it didn’t matter as she’d deregistered.

The life limiting illness thread was posted within hours of a junior Dr spending a few minutes with the poster and telling her as a result of her blood test that day the knew she had stage 3 leukemia. The thread on the life limiting illness board was one of a few posted over a few days on other boards concerning other health issues that included Covid when a few weeks pregnant, appendicitis when 5 weeks pregnant and also having Addison disease. The poster was supposedly already in hospital because of the appendix removal and as a result of something that happened to her whilst in there, her thigh went numb and she wet herself, she had an mri and a blood test. It’s that thread I knew of her from as I’d offered some support to her. It was the next day, maybe not even 12 Hours, that she came back and started the thread on the life limiting illness board after even already telling her 13 year old daughter about her diagnosis.

Was she a troll? I’ve absolutely no idea but there were things that did strike me as being a bit mhhmmm. However my interest in it was only ever the fact I directed her here and that very kind women who’d helped me may just be, as we say in Scotland, having a right rise taken out of them.

I hope this makes it very clear that there wasn’t a mob and that the poster had obviously been getting noticed prior to that final thread and for many it was the final straw.

To all of the ladies waiting on test results I wish you the very best and to everyone else that has been so kind to me over the last 18 months, many many thanks for your support and kindness.

I’m sorry Silkie, I hadn’t seen your last post.

Yes you are right Jelly, it was on life limiting not aibu and agree with everything you have said.

Also missed all the drama. Jelly you did the right thing.

After CT scan and MRI last Sunday and Monday actually got phone call from BCN on Wednesday evening telling me the chemo was working. Which was amazing as had an awful day that day and been on phone to Macmillan helpline having absolute breakdown.

I don’t know how much it’s working or if tumours have shrunk so still waiting for oncologist appointment on 18th. Last week she put me down to a 60% dose with no consultation because of side effects I reported to chemo nurses.

I want to be switched from Paclitaxel to Abraxane but I know it’s a cost saving thing for the NHS so I’m ready to fight. I think I’m a good candidate for Abraxane to see if it’s any better as I am am clearly not handling the side effects of tax. Some women do better on Abraxane as it’s in a different delivery mechanism, you don’t need pre-steroids or pre-piriton, and its shown to target cancer cells better in clinical trials. People tend to react less badly to it than Paclitaxel. But I can imagine how expensive it is and the thought of trying to argue with my oncologist …. So tiring. I don’t want to be on a 60% dose of chemo which is too slow and efficient to blast the cancer cells away before they have time to metastasise. I want to blast the cancer. I agree I need to be able to live without horrendous side effects however as I am stage 4 and this chemo is just the first line of treatment. But I can’t be on it indefinitely and a smaller dose just drags it out … but no side effects this week and no chemo this Friday so following in the footsteps of @Silkierabbit and others and going for weekend away with DD. I shall attempt not to fret about cancer (I would say “think” but that’s a step too far) until I see the oncologist next week!

@AGreatUsername good luck for today. Thinking of you.

Greetings to all of you, I am pleased to report that I am home having completed my circumnavigation in 87 days and about 2283 nautical miles, while DH has cycled 5000+ earth miles. I am so happy to have carried out the crazy plan and the fundraising for the green cancer charity is going ballistic now we are over the finishing line. It is two years to the day since my first dose of chemotherapy and it is wonderful to be feeling well and cheerful with bags of energy even if all my joints hurt!
@Silkierabbit how do you manage all that energetic stuff while still recovering from your latest dose of chemo? I would need a holiday to recover from your holiday!
@mowly77 I am so pleased your treatment is working, that is great news. It is a shame that you feel you have to battle with your doctors because it should be a collaboration.
With regard to the troll/ non troll above. My experience is that there are disturbed people out there who need a lot of attention and will spin stories to get it so it wouldn’t surprise me at all. Those of us who are trusting will get taken in occasionally but it’s still better than being cynical about everything. Like @MrsPnut my story would sound too unlikely to be real but it was.

Now I have to go home and sort out my house and the jungle around it, the mountains of post, and get my fingernails in shape for Mother of the Bride duty in four weeks time.
love to all, and especially @AGreatUsername and others waiting for results.
Top

It’s stage 3A1 low grade. The majority of the tumours were borderline but there was cancer in both, and also in 5 lymph nodes. I don’t know what to do or think or how to tell my family without breaking down.

chemo is apparently not very effective on low grade so the oncologist will help decide if I have chemo or hormonal treatment. It’s highly likely there are microscopic cells left that will turn into something in future. Yay.

I am so sorry AGreatUserName Getting the staging news is horrible and sending love and hugs.

I had a different cancer but a type which does not respond well to chemo but in the end after lots of research and discussion I did do it as it added a few more percent chance of survival. I would talk it through with oncologist and get experiences of women who have been in same boat, I also did own research but always checking with oncologist. Its hard to know what is the right decision in these circumstances as there are risks as well as possible benefits but just have to do what seems best at time. With telling people I would just tell them as and if you feel ready to. At this stage I also referred to Macmillan's BUPA counselling scheme, it was mainly just an hour of sympathy each week but it helped a bit. I found it helped to write down a list of questions. I found once I had lots of information I felt more confident we were doing all we could to maximise the chances of surviving it. But its an awful disease and I am so sorry.

Mowly Glad to hear you are getting out this weekend and glad they think the chemo is working. I found the steroids a nightmare on Pax, the Pax neuropathy I could manage at 90% dose and my steroids were halved which helped. Mine were anti lowering more than that due to decreased success rates though its something to discuss with your oncologist but yes its worth asking for a different one though its choose your poison and I could not get too excited when I was given a choice of 3 though I was lucky to get a choice on NHS. My neuropathy was really bad at 100% dose, I lost feeling in 1 leg for 2 days, was losing my balance and in my gums and below my eyes as well as hands and feet but at 90 was just hands and feet. And it is improving now its ended and its mild in hands and feet apart from the right thumb but only a week and a half since last one.

Top Well done on completing your epic adventure. I was on weekly Pax and my last dose was on 27 June but energy levels are returning. But have a lovely husband who loves helping, he does all the driving and fetched all the food.

First day on stopover I swam fine in outdoor pool, well around 50 lengths of it but a half sized pool, the next day I was not well at all but think it was school stress as they kept calling me for DS, and steroid withdrawal but tired and sick that day so others went out to St Michaels Mount, then next day went to Minack theatre but that is quite easy. Next day we went surfing for a lesson but the lady did not let me do much, very nice but once she knew had just done chemo and saw my balance was rubbish she held the board all the time. I did spend about 20 minutes wrestling wetsuits as they gave me an aged 14 one and also we put them on back to front so had to start again. And we walked with the heavy board 10 mins up and down beach. Then next day I seemed to have more energy as managed 2 hours kayaking by myself with DH in another kayak around St Michaels Mount. Then next day was just in a classic car, a Morgan 4 so the car did all the work but such a lovely day. We just stopped over at another hotel on way back and they had an outdoor pool too so swam about 50 lengths of that but again half length pool. I do think energy levels are returning which is good. I think as well when you do a bit of exercise it helps build it, its strange as first 10 mins is hard then it gets easier. I was really struggling with breathing start of week and now can breathe fine.

So all that seems left from chemo at the moment is neuropathy in feet and hands which is mild and I think improving, my teeth and eyes feel a bit weakened but are all still there. My appearance is trashed, it was amusing taking photos - well laugh or cry as I have 1 boob missing and so have to get the boobs to look even which generally don't, face is a bit swollen from steroids and hair well I managed with frozen peas to just about keep a short bob but the wind blows slightly and a gap appears. And swimming I go to one side now due to one missing boob.

And radio next that will stuff my energy levels again. And apparently the Tamoxifen will give me more depression. Oh joy. I so hope I don't get lymphoedema or lung issues from the radio. I was not worried at all but as it gets closer and I was so ill with steroids I am getting a bit jittery. Though main worry is poor DS atm. DD is doing really well and I am nearly through treatment now, well the worst of it.

Love to everyone.

I just wish I knew more. Does this mean my life is over? Is it just cancer now until it finally takes me down? Do 5 lymph nodes make it worse than 1 lymph node? Ovarian cancer statistics don’t seem to differentiate between high and low grade so I have no idea what my chances are, but seeing things like “median survival 80.6 months” does not fill me with hope.

I’m trying to stay positive for the kids but boy it is hard. Makes it worse that I am by far the stronger one out of me and my lovely DH. I am the one who picks up the pieces and says it’ll all be okay. All he’s done this afternoon is cry, I have ended up yelling at him, probably selfishly I feel like I am not allowed my moment of weakness because instead of propping me up he joins me in the weakness and SOMEONE has to stay strong. It’s always me. It’s so shit because he’s wonderful and I love him but this is so hard.

I just wanted to pop in and say a heartfelt thank you for holding my hand a few weeks ago when I was under investigation. I have felt so hesitant to come back, felt unworthy of the negative result and ashamed for posting it and haven taken your time. Ultimately though, it is also rude to just disappear, to women who held my hand so tight, despite their own crippling worries. I will never ever forget it. Sending all the love I have to each and everyone of you.